Sarah Defies Gravity

what one little chromosome taught me about love, life, and defying gravity.

One and One-Half Wandering Onlies

*with apologies to Paul Simon for jacking his song lyrics like that

It hit me today (okay, yesterday…) that I am, in fact, an only child.

Sort of.

I think it was because Sarah lost her lovey, which happened to have my sister’s voice in it. My sister died eight months ago next week. I still don’t want to write about the details, I still don’t want to talk about her. I know that when I do I will feel so much better, like all of the pain and hurt and feelings of fear and unhinged-ness will pour out and then evaporate (‘that’s poetic…that’s pathetic’) and I’ll feel a lot better. But I’m not ready to talk about it, and so I won’t. Because grief is a funny thing and it’s also a fickle mistress and I choose to give into it…or something.

But losing my sister made me, in a sense, an only child, and there’s the ever present reality that Sarah, too, will be an only child. That’s not a reality I like, that’s not the reality I would have chosen for her, but it’s the reality that exists and it’s the only one I have to work with, so, just like all of the other lemons life hands us, I have to accept her onliness.

Not that being an only child is so bad. I was a lot more settled in this decision when she was a newborn and we (the unit of Dec and I, back when it was a unit) made it together, but after we changed our minds, it was a reality that was a lot harder to swallow.

It’s a practical reality, and it’s a reality that will make things a lot easier and a lot better for both Sarah and myself because of the logical factors, but when it’s not the thing you want it’s hard not to want to throw something against the wall and yell SHIT! about it.

I wanted Sarah to have a sibling with Down Syndrome because even if they didn’t always get along, or their personalities clashed, there would always be someone there who understood her, someone who GOT all the things about having an extra chromosome that us lowly 46ers just can’t. And I wanted to have another child with Down Syndrome because Down Syndrome knocked me off my feet with how awesome it is, and because it’s all I’ve ever known. Down Syndrome parenting was something i wanted, and multiple children with Down Syndrome was also something I wanted.

Regardless of her sibling status, Sarah will have a good life. She has parents who adore her, she has family who adore her, she has people who have never even laid eyes on her who adore her. She has a spitfire personality, sparkling mischief in her eyes, and the will to fight. She has accomplished so many things in sixteen-going-on-seventeen months and she will continue to accomplish so many things for sixteen-going-on-seventeen months after that and after that and after that. She is beating cancer, she is crawling, she is saying Dada and Papa and NO, she is doing things and learning things and being things beyond my wildest imagination. She does not need a sibling to be whole.

Does it make me sad that she’ll never have a sibling? Yes, and it makes me sad that I’ll never have another baby. But in the end, I know that she’ll have a good life, and she might miss out on the sibling experience but she’ll gain so many other experiences. And I also know that this crazy journey started out with just Sarah and I and this crazy journey will end with just Sarah and I, and I’m okay with that. I’m okay with that because that’s the way it’s supposed to be, and because I can’t change the hand that fate has dealt us, I can only take it and own it, hand over my chips and accept twice as many in return. I can deal with that.

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2 thoughts on “One and One-Half Wandering Onlies

  1. Okay… I totally want to be your friend. It’s amazing how similarly our brains work. 🙂 I thought no one else in the world had a thought process like mine.

    And yes, one day you’ll boot your mistress out on her butt and be glad to see the back of her. But for now, cuddle in and rest there. It’ll do your heart good. I lost my dad two years ago (geez – is forever really that long?) and I still cry probably once a week about it. I still can’t look at his picture without welling up. I live on the other side of the world from my Mom but she sent me some of the clothes that I remember most and there they sit. Just hanging in my closet with all my other clothes. I can’t touch them, wash them or wear them. Except one shirt. I’ve worn that and it made me feel closer to him. Other than that – I’m still not ready.

    I also thought my little man (who has DS and is now almost 5) would be an only child because I was told I would never have ANY children. HA! And you know what? I was okay with it too. Granted, his Dad is still very much with us but I knew it would just be us. Then… BANG! Pregnant again. 🙂 Now he has a 17 month old sister. So – you just never know. But being in that place of knowing and being content to just “be” is an awesome beyond awesome place to be. I’m there again now in this phase of my life and I love it.

    Dancing this dance of life right alongside you! 🙂

  2. Never say never…don’t do it.

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